Chateau Pasqua... Again

Tom's counts bottomed out again - he's had absolutely zero neutrophils for several days in a row now, meaning he has no protection from germs and infections. He had a fever on Wednesday night that was 38.5 C when he was admitted, and spiked up to 39.7 (almost 104 Fahrenheit) that night. The fever seems to be resolved now, but because his blood culture tested positive for bacteria on Wednesday night, he is on heavy duty antibiotics to fight off infection. We're likely here for a few more days. We are keeping his door shut at the hospital, because there seems to always be babies with bad croupy coughs nearby...poor little ones...but we don't want Tom to pick up any additional problems.

There've been some new diagnoses in the last few months - new cases of Burkitts Lymphoma, Wilms Tumor, and two new ALL (acute lymphocytic leukemia - a.k.a. the 'good kind'). We were relieved to hear of the new Leukemia patients, because it was seeming to us 'cancer moms' that all the cases lately were complicated ones, and we didn't like the trend we were seeing!

For those who may not know: to the rest of the world, Leukemia is not a good news story. But in the cancer world, a diagnosis of straight, garden variety ALL leukemia is good news. Of all the cancers your child might have, this one has a cure rate of over 90%. We should all be so lucky...

Between the new families and those already in treatment, oncology cases are taking up about half of the available beds on most days, over here in Pasqua Pediatrics. We saw an article in the paper recently that the Health District is still planning to combine the General and Pasqua Peds units into one. Yes, for only $23 million, they will move all the pediatrics over to the General, and create 3 more beds than the combined units have now.

Tom's sisters have been his main visitors and source of entertainment this week: Jeanine came up one afternoon and watched another installment in the Star Wars series with Tom. (They are working their way through the series, in sequential order.) Nancy made it home from Minot, and was up yesterday afternoon with her friend Natasha to visit. Laura brought us movies and junk food, and most importantly, homemade apple noodles, and watched a movie with us last night. (Mike is fighting off a cold and doesn't want to share it with Tom or anyone else on the ward.)

Tom's levels of potassium, magnesium and sodium phosphate are all depleted, so he's been getting top-ups of all those minerals via IV. He had platelets Wednesday, Thursday and Friday, and red blood on Thursday and Friday. They are testing his blood every day, and we are waiting for signs that his immune system is beginning to recover. Today his neutrophils are 0.4, and his platelet and hemoglobin levels are up enough that he won't get any transfusions today. So we may be on the right track...

If you are healthy though, we'd love to have you visit. Tom's feeling pretty good, but boredom is your main enemy at this point.

Thanks for stopping by, and thanks for your prayers. We're so grateful for your continued support.

TTYL,
Thomas' Mom

P.S. Thanks also to the 'cookie fairy', whomever you may be! (A kind soul left a bag of goodies in our mailbox earlier this week. Yummm.)

Our Epic Vacation**

From 2011-01-29 to 2011-02-05 The Cruise

The Norwegian Epic
Passenger Capacity: 4,100 (double occupancy)
Gross Register Tonnage: 155,873
Overall Length: 1,081 feet
Max Beam: 133 feet
Draft: 28.5 feet
Engines: Diesel Electric
Cruise Speed: 22 knots
Crew: 1,708
Our Cabins: Family Balcony Rooms, 14th Deck, Forward
See Deck Plan, Look for rooms 1406 and 1408


Laura, Jeanine and I pulled an all-nighter to get packed and ready to go at 3:30 AM - I never would have made it without them! It took 2 taxi vans to get all 5 of us plus our luggage, and Tom's wheelchair to the airport. We flew first to Toronto, where we had to pick up our luggage and clear Customs before we could board our plane to Miami.

When we got to Miami we connected with Nancy, who had arrived a few hours earlier from Minot. We stayed overnight in the Miami International Hotel - which is right in the airport. The Children's Wish Foundation had arranged for 2 rooms for us. It's amazingly soundproof, we never so much as heard a plane overhead or traffic in front of the building. It was weird, but very comfortable. While in the airport, we found these hand-held battery operated fans that were to become a life saver for Tom during the trip. They were 2 for $30, and I think it was the best $30 we ever spent!

At noon on Saturday we went to the Norwegian desk at one of the baggage carousels so we could board the shuttle that would take us to the pier. We were pleasantly surprised to find that people in wheelchairs got VIP service, and we were very quickly processed and were on board the ship. They had party music blasting, and a cheering receiving line of officers and various personnel to great us. Mike, who got swept up in the music and dancing, happened to be carrying Tom's crutches. So he danced up the gangway yelling, "Hallelujah, I can walk again! It's a miracle!" What a nut bar.

We left Miami on the afternoon of Saturday January 29th. It seemed like everyone was on the upper deck celebrating, people watching and enjoying some refreshing beverages. They listed all the nationalities of people on board, to a chorus of cheers as each country was named. Of course, there was a large and noisy contingent of Canadians --- and to my surprise, I found myself cheering next to someone who works in the same office building as I do! We hugged and laughed, agreeing we should keep it quiet or the Americans would be convinced we really do all know one another!

Some of the highlights on and off the ship:

* Dinner in Teppanyaki our first night at sea. We sat together with 2 gals from Ireland around a Japanese Habachi, and were entertained as our chef sliced and diced our dinner right before our eyes.

* The acrobatic show called "Cirque Dreams and Dinner", where we were amazed by the very talented performances as our dinner was served.

* Dinner in La Cuchina, the Italian restaurant. It was a very authentic experience, and we really enjoyed it. Mmmm. Butter.....

* Legends, where impersonators portrayed Janet Jackson, Neil Diamond and Aretha Franklin. "Aretha" was especially amazing!

* Cagney's Steakhouse was the site of Jeanine's 21st B-Day celebration. The best (the absolute BEST) steak we have ever eaten. It melted in your mouth.

* The girls, Mike and I went to "Howl at the Moon" the dueling piano show, and nearly triggered an international incident when I sent up a Canadian $5 bill to request Summer of '69.

* Second City improv group, who used suggestions from the crowd to ad-lib funny situations. Tom was happy when they used a couple of his ideas as part of their act.

* Looking forward to coming back to our cabin each night to see what the latest towel animal was, courtesy of our friendly cabin steward, Sopiyan (Sopi for short).

* Floating in the salty ocean with Tom, in a sling chair attached to a pool noodle, while Mike and the girls tried snorkeling off the shore of the island of St. Maarten, in the Netherlands Antilles.

* Wading out into the crystal blue waters of Magens Bay beach on the island of St. Thomas, in the U.S. Virgin Islands.

* Floating on inner tubes around the amazing resort of Atlantis or Paradise Island, at Nassau, in the Bahamas.

* The great staff who went out of their way to be kind to us, including the Blue Man Group who wanted to meet Tom and presented him with a picture made during their show.

* The private tour of the bridge the Captain gave to Tom, Mike and I.

* Ordering in room service and hanging out as a family to watch movies.

* Going to sleep at night with the balcony doors open a little, so we could hear the ocean waves 'wush wush' as were rocked to sleep.

There were some challenges, too. The heat took a toll on Tom's energy level, and combined with the swaying of the boat, he seemed to be very sleepy all the time. His range of motion on his left leg has diminished significantly, and by the end of the week he found that presented a lot of difficulties. Through it all, he remained mentally tough, but the day that really got him down was the day he hurt his knee at Atlantis in Nassau. He and I left the park early so he could go back and rest, and a friendly Bahamian customs officer gave him his well loved prayer card - we'll have to get someone who speaks Spanish to translate it for us, but the sincerity of his gesture was very much appreciated.

We found that his pain meds weren't holding him between dosages, so he needed 'breakthrough' pain medication more frequently. We were storm stayed in Toronto, and he valiantly pushed himself to climb into the airport shuttle to the hotel, but it took a lot out of him. The next morning, he and I had to travel by taxi, and the rest of the family took the shuttle back to the airport. Going from +30 Celsius to -30 Celsius in less than 24 hours was very depressing! But we were so glad to be home. Our house and doggie sitter greeted us with a terrific brunch. Even now, we're unpacked but not all sorted out yet - the luggage is still stacked in the rec room, and the summer clothes aren't all put away again.

Tom had one night at home in his own bed before we were off to the Clinic for a week of chemo. Thankfully, it was all done on an outpatient basis, and we could go home every night. We came home with his pre-drawn injection of Neulasta with us, to be administered on Saturday. We learned that the actual cost of that injection, which is being picked up under Saskatchewan Health, is over $2,200. For 6 mg of medication. Thank God for public health care, right? The Neulasta will help his body's bone marrow produce white blood cells, and combat the effects of the chemo. The week was relatively uneventful, no overwhelming nausea. It only took 3 tries to access his port, and we hope that they've worked the kinks out of the process now.

One of the pain specialists came to see him twice during the week, and she prescribed some changes to his meds. It may be too soon to celebrate, but I think things are gradually improving. He felt energetic enough to make it to his guitar lesson on Saturday, so that's a step in the right direction.

Tom enjoyed visits from Austin and his mom and brother, Pastor Cory and Dylan this past week. This coming week we'll try to get him back into pool therapy at Wascana Rehab, and try to at least get him to Choir class. He hasn't been able to attend school since the pain started spiralling out of control  in November, so it would seem that both semesters are a write-off. For now, that is not our biggest priority, but we will still try to keep his connections to the school community up to date - it energizes him.

I am currently off work for a while, starting the 11th of February. The nice part is being around to hang out with Tom and help make things easier for him. Mike is working to get things set up so he can work some of the time at home, with a laptop.

Tom will continue this treatment for a few rounds before we will have more scans done to see how things are going. He continues to amaze us with his combination of mental toughness and loving heart. Please join us in praying for a miracle - our dearest wish is for him to be cured and not have to endure all this again.

He loves company - please feel free to give us a call and stop by.


God bless you all,
Thomas' Mom

**Our lovely vacation was a gift from the Children's Wish Foundation. We thank God for them, and for all the people whose prayers and warm wishes surround us all the time, and especially on our big trip. We are truly blessed!

Where's Thomas?

At home, and doing fine!

The blog has been quiet for a bit - my apologies if anyone was worried by the silence! We were fairly preoccupied, because we were getting ready to take a family vacation at the end of January.

There's a terrific charitable organization, called the Children's Wish Foundation of Canada, that grants wishes to children facing a life threatening disease or condition. Tom's wish was for a family vacation. It was so much fun, thinking about it and planning for it over the past few months. Originally our plan was to take a trip after chemo was all done and things were back to normal, but that was not meant to be. We decided to go ahead with our plans now, despite the challenges.

We left Regina on Friday, January 29th, bound for Miami, where we boarded the Norwegian Epic, the 3rd largest cruise ship in the world today. Our whole family, including our 3 daughters, were able to participate in this trip. Together, we had a wonderful time on a 7 day cruise of the Eastern Caribbean.

We had 3 full days at sea, and stops in the ports of St. Maarten, St. Thomas and Nassau. We were supposed to have gotten home late Saturday night. However, due to an unfortunate series of events involving both mechanical problems, heavy snow, and the illness of another passenger on our plane, we missed our connection to Regina and had an unplanned extension of our vacation...we spent a night in Toronto, and finally made it home just before noon today (Sunday).

Tom's scheduled for a check up tomorrow at the Cancer Clinic, blood counts and presumably a week of chemo this coming week. He's tired and sore from the extra activity, but we are all really glad we had this special time together.

We are so grateful for this trip and the wonderful memories it has created. It was truly the trip of a lifetime, and something we would not have otherwise been able to do. We met some wonderful people, saw some amazing sights, and the staff on the cruise ship went out of their way to make things as easy for us as possible.

I hope to post more details and some pictures in a post later on this week, but I just wanted to quickly bring you all up to date.

God bless,
Thomas' Mom